Archive for the ‘Uncategorized’ Category

WI Representative Mark Pocan Joins Lyme Caucus

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Wisconsin Representative Mark Pocan joined the Lyme Caucus yesterday.

The caucus is a bi-partisan group working together in Congress to take action on Lyme and other tick-borne diseases.  Under the leadership of Chris Smith (NJ) and Colin Peterson (MN), it has initiated letters and actions to benefit Lyme patients, such as the inclusion of the monies for Lyme and tick-borne diseases into the Congressionally Directed Medical Research Program (CDMRP) and language and Lyme monies into Appropriations over the years and has initiated favorable legislation.  Additionally, it has queried government agencies over policies not favorable to patients.  This has reminded the agencies that someone is looking over their shoulder.  Many meetings have been held and educational sessions in DC for Congress.

With nearly 400,000 new cases of Lyme Disease per year, and Wisconsin ranking 6th in the nation, this is an important issue to Wisconinites.  There are nearly 20 tick-borne diseases (and counting) being spread by at least 8 different ticks (and counting) with 30% of reported cases occurring in children between the ages of 0-19.  

In 2015, the caucus secured for the first time ever, $5 million in funding in the House Appropriations Committee annual military spending legislation, which was adopted in the Fiscal Year 2016 funding bill which was signed into law, and will provide resources for Lyme disease research through DOD’s innovative, high-risk, high reward program.

In December of 2016, the United States House of Representatives passed, and former President Obama signed, the 21st Century Cures Act.  The Cures Act included language, similar to a bill that Rep. Smith introduced previously, which created the Interagency Lyme and Tick-Borne Disease Working Group.  Specifically, the Working Group is comprised of federal and non-federal members tasked with reporting to Congress on scientific advances, research questions, surveillance activities and emerging strains in species of pathogenic organisms.

For more see:  https://madisonarealymesupportgroup.com/2016/12/14/21st-cca-signed-into-law/  Bill language is included at the bottom of the article.

Please contact your WI representative and ask them to join the Caucus.  Let’s represent Wisconsin well:  https://www.govtrack.us/congress/members/WI

Category:

Activism, Lyme, Uncategorized

Dr. Stricker at MyLymeData Conference

  May 17, 2017

LymeDisease.org board member Dr. Raphael Stricker, who serves as co-principal investigator of MyLymeData, spoke about big data, big pharma, and precision medicine.

Fantastic 30 minutes of great information.  My only comment is that I found myself fitting into the irregular group that had Lyme arthritis (swollen, red, hot to the touch knee with fever) as well as a itchy ringed rash that appeared after I started treatment.  Personally, I’m glad I was being treated for Tick Borne Illness and not Ringworm!  I’m also thankful for his reminder of the sexual transmission aspect that everyone seems to be dodging as well as the faulty testing.

Category:

Uncategorized

May Support Group Reminder

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Picture taken at the Lyme Protest in Madison in 2014.  

Photos courtesy of Della Haugen (Della’s story here):  https://madisonarealymesupportgroup.com/2010/05/08/my-lyme-story-writen-for-lymenaides/

**Our last support group meeting until fall** is this Wednesday, May 17 (2017) from 6:00pm-8:30pm at the Pinney Library on 204 Cottage Grove Road, Madison, WI.

Bring questions, ideas, and share what’s been working for you.

See you there!

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My first Lyme rally when I was sicker than a dog.  I was impressed then and I’m impressed now with the dedication of Lyme/MSIDS patients and advocates despite an illness that brings you to your knees.  (I’ve got my hand up)

 

Category:

Uncategorized

Systemic Review of Cerebrovascular Manifestations of LD

http://journal.frontiersin.org/article/10.3389/fneur.2017.00146/full

Frontiers in Neurology,  20 April 2017

Cerebrovascular Manifestations of Lyme Neuroborreliosis—A Systematic Review of Published Cases

imageAdam Garkowski1*, imageJoanna Zajkowska2, imageAgata Zajkowska3, imageAlina Kułakowska3,imageOlga Zajkowska4, imageBożena Kubas5, imageDorota Jurgilewicz5, imageMarcin Hładuński5 andimageUrszula Łebkowska1
  • 1Department of Radiology, Medical University of Białystok, Białystok, Poland
  • 2Department of Infectious Diseases and Neuroinfections, Medical University of Białystok, Białystok, Poland
  • 3Department of Neurology, Medical University of Białystok, Białystok, Poland
  • 4Faculty of Applied Informatics and Mathematics, Warsaw University of Life Sciences SGGW, Warsaw, Poland
  • 5Independent Department, Laboratory of Molecular Imaging, Medical University of Białystok, Białystok, Poland

Background: Lyme neuroborreliosis (LNB) is a disease caused by spirochete Borrelia burgdorferi, involving the nervous system. It usually manifests as lymphocytic meningoradiculitis, but in rare cases, it can also lead to cerebrovascular complications. We aimed to perform a systematic review of all reported cases of LNB complicated by central nervous system vasculitis and stroke or transient ischemic attack (TIA).

Materials and methods: We conducted a systematic review of literature between May 1987 and December 2016 with patients who presented with cerebrovascular course of LNB.

Results: This study included 88 patients with a median age of 46 years. The median interval from onset of symptoms suggesting Lyme disease to first symptoms of cerebrovascular manifestations of LNB was 3.5 months. The most common cerebrovascular manifestation of LNB was ischemic stroke (76.1%), followed by TIA –transient ischemic attack (11.4%). The posterior circulation was affected alone in 37.8% of patients, the anterior circulation in 24.4% of patients, and in 37.8% of cases, posterior and anterior circulations were affected simultaneously. The most common affected vessels were middle cerebral artery—in 19 cases, basilar artery—in 17 cases, and anterior cerebral artery—in 16 cases. A good response to antibiotic treatment was achieved in the vast number of patients (75.3%). The overall mortality rate was 4.7%.

Conclusion: Cerebral vasculitis and stroke due to LNB should be considered, especially in patients who live in or have come from areas with high prevalence of tick-borne diseases, as well as in those without cardiovascular risk factors, but with stroke-like symptoms of unknown cause.

Supplementary Material
The Supplementary Material for this article can be found online at http://journal.frontiersin.org/article/10.3389/fneur.2017.00146/full#supplementary-material.  **This data shows year of publication, signs and symptoms, CSF protein level, Radiological/histopathological features, treatment, and outcome (complete or incomplete).  (Treatments included:  penicillin, steroids, ceftriaxone, doxycycline, amoxicillin, azithromycin, probenecid, cyclophosphamide, cefotaxime, and ampicillin) 

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Uncategorized

May is Lyme Awareness Month in Wisconsin since 2004

In Wisconsin the Legislature passes the proclamation every year at the state level.  Hopefully the 2017 Assembly Joint Resolution 41 will pass tomorrow.  I will post it as soon as it does.  But here is the 2004 proclamation:

 

LYME Certificate

Category:

Activism, Lyme, Uncategorized